Surviving Survivor's Guilt

Survivor’s guilt or survivor’s syndrome is, by definition, a mental condition that occurs when a person perceives himself or herself to have done something wrong by having survived a traumatic event when others did not. It is a term often heard in reference to the military and combat situations where a fellow soldier came home in a box draped by the American flag while others survived and completed their tour of duty. Holocaust survivors, rescue workers, people who have received transplants and others have all described what we call survivor’s guilt and we all seem to understand that and accept that. The form of survivor’s guilt not often spoken about, however, is the form that develops in those with chronic conditions who have for some reason or another been spared while peers with the same, similar, or various other conditions have died.

I, myself, have been struggling with this particular demon for the last two years. On September 4 2014 my oldest sister was diagnosed with terminal aggressive brain cancer at 37 years of age.  On the evening of November 2 2014, my family surrounded the hospital bed that had been in our living room for the past month. I took my place at the end of that bed and gently laid my hand on my oldest sister’s foot as she took her last breath. When my family was unsure if she'd truly died as she'd begun going through periods where she wouldn't breathe for a long time and then suddenly she would, I moved to feel for a pulse and we knew that her battle against brain cancer was over.

During the almost two months between her diagnosis and her death, I pushed aside my PTSD demons and did anything and everything I could for her and could be heard now and then muttering that it should be me. Since her death, I’ve been heard saying that it should have been me and asking why wasn’t it me more frequently. She was brilliant. She had her MBA and was working on her PhD. She had a life she loved and had made something incredible of herself. I, on the other hand, had been dealt a crappy hand in life from an early age. I was diagnosed with multiple sclerosis and a year later had a simple surgery go very wrong when a life-threatening and life-altering infection took hold of my right leg at the surgical site. Eventually, infection caused the amputation of my right leg above the knee and even that did not end the cycle of infections. Prior to my sister’s death, I’d suffered several arterial hemorrhages and two bouts of sepsis. I’d stood at death’s door only to walk away more times than I care to think about and yet there I was, living while my sister had been handed death in the cruelest way. She was so incredibly smart and she was taken down by brain cancer.

I couldn’t stop thinking that this wasn’t how it was supposed to play out.  I was the Jones sister who was supposed to die. I was the one that death, himself in his sickening ghoulish glory, kept circling. My two older sisters and my parents knew the odds were good that one day I wouldn’t come out of the OR alive. They didn’t think about it but they knew it. In fact, it was my oldest sister who periodically reminded our mother that they might all have to continue their lives without me physically here. I had foolishly gotten myself to believe that if I continued to take all of the serious medical hits that it would spare the rest of my family and Michaeleh’s diagnosis and death was a punch to the gut obliterating those foolish beliefs. My other sister came down on me hard for thinking the way I did and for saying that it was supposed to be me and she and I endured a very rocky relationship for quite some time because of my guilt. I finally talked with a dear friend who had been wounded in Afghanistan about survivor’s guilt and am so thankful that he was willing to go down that rabbit hole with me knowing it may very well screw with his own head.

In August of last year, I suffered my most serious bout with sepsis. I had a temperature of 106.2, which caused seizures and, for lack of a better phrase, boiled my brain which left me with post-septic headaches now and then that absolutely level me. This summer we learned that the bone infection that took my leg had migrated to my right arm. In a few months I will go for yet another surgery or series of surgeries to create a single boned forearm because infection completely ate away my ulna. I'll never have full use of my arm again and God forbid the infection returns I could, in fact, lose it.

November 2 has been a very hard day for all of us since 2014 but for me it brings back the strong emotions that come with survivor’s guilt. I light a candle in memory of my sister, sit in a pew, and think “Why? Why didn’t the universe take me? It should have been me.” The only way that I can find solace is by then reminding myself that this isn’t how my sister would want me to feel and I am reminded of one of the last conversations I’d had with her.

I’d sat by her bed at the hospital and said, “I’m so sorry Michaeleh. It should be me in this bed. It should be me dying. I’m so sorry I can’t save you.” I thought she’d been asleep. She hadn’t eaten all day or opened her eyes even once. When I looked down at her after I’d apologized for something that even as I'd said it was aware that it was beyond my control, her eyes were open looking at me. In short staccato sentences she told me, “Don’t blame yourself. Don’t feel guilty. You’re still here. You have a job to do. This is not your fault.”

I know in my heart that her words were true. I know that it isn’t my fault and that I shouldn’t carry any guilt on my shoulders for continuing to survive that which should have killed me years ago. I do firmly believe as I said at her memorial service, that at least one of the reasons for my own suffering has to be so that I’d be in the unique position to understand my oldest sister and because she knew I understood she talked to me the most. Was that “my job” as she worded it? Do I still have a job to do? I suppose, since I choose to believe in my sister, that I must still have a job to do because I’m still here.

Survivor’s guilt is a painful and truly harsh thing. I can’t make myself not feel it. I can’t pretend it’s not there lurking in the dark corners of my mind. I can’t say that I’m over it. I can, however, acknowledge it just as I acknowledge my other demons and ride it out when it strikes. I can speak up about it using my talents of writing and art. I can then pick myself up off of the floor, dust myself off, and look to the sky and say, “I know, Michaeleh, I know. I’ve got a job to do.”